I was dignosed with hep c 1 yr ago. My viral load at that time was 18 million with normal alt levels. I have not been treated but I have changed my diet to a nutritional one and I do not drink anymore, my hole life has changed. I live one day at a time. I recently went to the doctor and my viral load was at 1 million with an alt count of 57, high normal being 40 on their scale. How could this be. Is this normal, could I really beat this desease with the right choices I have taken. Please advice thank you, litecloud
You might want to check the "life without tx thread of MArch 12, some posts below, a lot of knowledgeable people posted there.
They will later come along, I am at work and killing time, so I wanted to tell you to stand by.
You can improve your general health with the proper diet and fitness choices, but it will have no antiviral properties in chronic hep c, the virus has overcome your immune system and it can no longer fight it on its own. What is your level of liver damage?
THanks Scott: it's funny how we think those darn vital loads mean something. But I guess when your under treatment that they really start to mean something, yah think? What good is an ultra sound? how much of a dignostic tool is it? Should I have a BX before I start treatment.Thanks for all your responses. We really need support when we have a chronic illness. It is not easy to halt your life and start all over again, but am glad as silly as it sounds that I have gotten a chance to change and start over again.
Until fall 2002 my enzymes were either normal or in the high range of normal, even though I had such a high viral load it couldn't be precisely measured at the time. I think the tests are more precise now. My enzymes eventually spiked but I went a long time with normal to normal/high.
Good luck to you and no, I don't think it's silly at all to feel blessed for being given a chance to make a change. Hope you stay well! : )
As far as I know an ultra sound is good in order to detect tumors, excessive inflamation, etc. etc.
But I wouldn't rely on one very much when it comes to this.
My ultrasound was completely normal, it wasn't until I got the biopsy that I learned I was stage 3/grade 3.
The ultrasound didn't pick this up.
ok you guys I will demand a bx I will let yah know the news later, those Dr's take forever to give you answers. Thanks, I need to know if my liver is damaged or not. Hope all is well.
Any ideas on the depression and fatigue from this darn thing?
Is there anything I can take for the fatigue?
AH! the blessed fatigue/achy /worn out feeling of hcv.
Other than continuing your healthy eating habits, and including some form of physical fitness (nothing too strenous), supplementing with good quality antioxidants, I don't know of a magic solution.
Some clinical trials are showing promise with St. John's wort for mild depression. As hard as it sometimes might be, exercise is one of the best non-drug antideppressants.
Your condition has made you an unexpected member of our group of hcv fighters, and brought you to the gates of new friendships.
Learn all you can about your specific infection status and liver condition so that you can make an informed decission whether to treat or not. If you are in your 50s, you should consider trying to kill the virus now. your liver might not get severe damage from hcv for decades, but there are other hcv related conditions that can become disabling.
Keep in touch
Thank you Larry.
HEP B vaccine should be vaccinated? If so before or after treatment.
Larry was saying he had all this eye problems because of his meds. I am not on any meds and my eyes are dry and burn at times already. Boy the things am looking foward to. Am glad I found you guys, I can vent, when things don't go to well, am hoping you guys won't mind.
Knowing the condition of your liver by the results of a biopsy is helpful information. Mine was almost no fibrosis. I don't remember the inflamation but it was low. I discovered I had Hep C in Nov 2001 and began "alternative" treatments which were really methods to improve my health and try to boost my immune system. I lost 20 lbs and in some ways felt much healthier but the fatigue remained and seemed to be getting worse which weakened my resolve. I started smoking again in a moment of desperation. Dumb! The old nicotene addiction was stronger then ever but the effects of smoking were poisonous. I managed to substitute nicotene gum 5 months later and started tx for 6 months. Pegasys Genotype 2B. Last shot Aug 1, 2003. 30 days after tx feeling better, SVR. 90 days post tx; ALT 145, viral load 1.7 million. Calcium low, fasting glucose 120. Doc says wait til after holidays & will look at treating again. I had been having problems since tx with my eyes, very bloodshot in the mornings,light sensitive at night, taillights and traffic lights seemed exceptionally bright and headlights from oncoming traffic would almost blind me. Really felt the fatigue in my eyes by the end of the day. Went to an Opthamologist, they found blood vessels in my eyes leaking blood. Said it wasn't a common side effect but it was definitely from the interferon. Said it was similar to what they find in people after 20 years of full blown diabetes. Had laser treatment to cauterize the vessels. Doc now says the risk of damage to my vision from interferon is greater than the risk of damage to my liver from Hep C and recommends I not do tx again, get blood work every 6 months, maybe a biopsy in 4-5 years and maybe there will be new non-interferon drugs in about 5 years. I was pretty sure I was gonna kick that dragon's ass. Like others I felt like I was lucky to be 2B and was humbled many times on this board by the suffering of others and the courage and attitude they shared. Of course after treatment I returned to eating the way I did before knowledge of Hep C, confident that I was "cured" and deserving the indulgences after having spent 6 months on the "rack" of peg combo. I hope this doesn't scare anybody. Any loss of vision I have is on the periphery, and I don't even notice it. I get my eyes rechecked in June. Hopefully thats the end of it. I celebrated 19 years sober and drug free in December, (another aging child of the 60's.) Seems like the last 5-10 years have been spent trying to "improve the quality of my life". Sometimes I think we cling so dearly to life we forget to live it. Last week I had to put my Mom age 84 in an assisted living program in Florida. The doc says she has the heart and lungs and intestines of a 30 year old, but she will tell you the same story 3 times in 30 minutes. She has a remarkably strong spirit and will to live (sometimes called stubborness). Last month I bought a Harley. I had to give up motorcycles 25 years ago because they were threatening my research of uncontrolable substances. I'm looking forward to cruising the back roads of Michigan this summer in the evenings after work and on week ends. May we each find what we're looking for. Peace! Larry
On extrahepatic hcv related conditions, someone posted links in the thread "group advises against hcv testing' dated yesterday. Hcv is not only a liver disease, it likes those cells to replicate, but it seems to be more systemic than originally thought.
After 38 shots, I just had my eyes checked and they are fine. Everybody seems to react so differently. I do have a hypersensitivity to bright light and vision is a little worse, but nothing too disabling. I am sorry your tx did not give you that precious goal of svr.
Milkthistle really seemed to help my husband before he began treatment, but when his itching & dry skin got worse he decided to back off of it for awhile. Not sure if it was the cause, but try it & see if it helps your fatigue.
There is a big push for hep b vaccination. I personally passed on it.
Hep a is more contagious so that might be a different story.
I will stick to universal precautions, same thing that will keep me hiv free. That is my preference.
This vaccine has been around for a while, but it is only a few years since it was mandated on a large scale. To me, there is not enough long term data (of sides) based on its used in the large population.
Some european countries are more cautious in mandating it for everyone.
I passed, others didn't. Inform yourself through your own net search, that is what I did.
Can someone interpret my blood test results for me and tell me what they mean. I am genotype 1b. I understand that part. My HCV RNA (IU/ML) is 5060000 H (50 IU/ml) then under that it says
HCV RNA (LOG IU.ML) 6.70 H Then on another test i9t says AST (SGOT) is 92 and ALT (SGPT)is 80.
Also, I am taking a medication that is used for Parkinson's (which I take for another problem) called Requip. There is a warning that people with liver disease should consult their Dr., yadda yadda yadda. I'm wondering if this medication could affect my viral load or the other two numbers.
Sorry to be so ignorant. I'm just learning and am having difficulty absorbing what I'm reading. The Requip that I'm taking gives me incredible brain fog. Without it I'm awake for days which makes me cranky (to say the least).
I also have a strange symptom and I'm wondering if it's related to the HCV. When my hands get cold I break out in a rash on my hands and they itch so badly I can hardly stand it. This started around the time of my diagnosis and am wondering it it's related or just coincidence. The Dr. just shrugged it off. I'm not worried about it..it's just annoying...but do wonder if it's a related symptom.
Larry asked me a question last night about what my ferritin level was... I thought he was talkin about a drug..SILLY NEWB hahaha.. I was doing some reading and realized it was my iron level HAAHA silly NEWB again. please give me more info on why this is important to gave done and how can it interfere with treatment.. SOMEONE PLEASE INFORM THE NEWB..BEFORE SHE MAKES AN A#%s of herself.
Sandi...I don't understand..You say you have early cirrois (sp) but your dr wants you to get on liver transplant list??? Are you having other problems with this? I guess it puzzles me because I always thought they wouldn't consider putting you on a list until ESLD so not sure? And wouldn't the tx if you respond...help also?
Not to worry about making and A$$ of yourself. I am a relative newbie also (#11/48) and you can't even imagine some of the dumb stuff I come up with! It took me two weeks to figure out ESLD meant end stage liver disease. So, ask any questions you want. This Board is full of helpful people and someone will always answer and NOBODY will think you are asking silly questions. The only dumb question is the one not asked!
Hi there I had both hep A & B shots before & flu shot, also had ultra sound which showed everything was normal, then had biop, whole different ballgame, stage 3 grade 3,I'm a geno 2, did shot # 9 last night of 24,the combo 800 riba & .5 peg .Have just picked up this real attractive sx of red dry burning skin turning white peeling stuff on my face and scalp,next chapter who knows everyone seems to be different.Just be as healthy and happy,think possitive,as you can muster, arm yourself with knowledge and get your shots.Gone shopping....Sue
Is that redness around your eyes also? Itchy red on lids and under eyes? I'm on #38 and PA doesn't believe is TX related this late in the ballgame. I'm on Atarax for it and cortisone cream. red raccoon eye syndrome, lol.
Litecloud, I hope you see this.... didn't get back online till this morning so didn't see your question till now.
What I really meant to say is that my doctor couldn't explain to me what is the relationship between high viral load and elevated liver enzymes. After years of having this disease and looking for all the world like I would be asymptomatic and healthy indefinitely, my enzymes went up.
In the absence of an explanation, this is what I think: I attribute it to a medication I was taking called Fosomax, for osteoporosis. Having the early signs of it, and being only in my 40s, my doctor put me on it.
After 3 mos. of taking it, my enzymes shot up to 70s-80s. I admittedly am self-diagnosing here, but the rest of the story is hard to ignore. After 3 more months they climbed to 170 - 240. I was still taking the fosomax. Then, despite my doctor's assurances that it was safe, I quit taking it. After 3 months my enzymes went down slightly. After 6 months they went down to high 40s. Isn't that uncanny?
Doctors don't like anecdotes, and two of them have discredited my insistence that the fosomax was the culprit. But I will always wonder.
I think the main thing is to constantly watch the enzymes and watch for symptoms. It sounds like you're doing great.
i am as confused as you are by his statement. i think he is just preparing me mentally for this. he hasn't done any thing besides talk about it. but, this was my first visit to him.
i can't believe the differences in my 2 doctors. one acted like the whole thing was no big deal and this one talks of transplants and doing high dose interferon, and multiple biopsies in the future.
my old dr. would have taken me off tx this month and sent me on my merry way. i'm 3a in month 5. no test for viral load yet. i don't even know if i'm clear yet.
but, my new dr. is baseing this soley on my alt/ast... numbers. they are still high. so the liver is still dieing for some reason.
i think do to being overweight or perhaps not being clear of the virus yet. he infered that it could be just due to the extent of damage in the liver just continueing. there is obviously some people who clear and their liver improves and others the liver just keeps getting worse,clear or not clear...that is his reasoning for future biopsies. i agree with the new dr. this is what i have suspected from my reading...
who knows at this point i am preparing myself for the worst.
I have been sick with sinusitis,Brochitis for the last 2 weeks, I can't get rid of this cr@#P .. I have been on Omnicef(antibiotic)and it did not work so I got Biaxin( another antibiotic) and humibid and albuterol inhaler. My question is are regular sickness harder to fight off because of our immune system being cr@$PY? Has anyone else had this problem?
It sounds like you went from one extreme dr to another. The first one sounds like a real jerk and the 2nd is definitely on top of things, however I'm afraid it sounds all a bit hasty in my opinion. I guess you told him about your mom passing away right? What is your alt/ast? And yes,,,,you definitely need a pcr to see if meds are working. You have voiced that you are concerned about being overweight and thinking that this might be contributing to the liver damage. Have you started watching your diet more? I feel really bad for you as knowing about your mom and then this...is kinda scary what he told you and you are pretty much just left trying to mull it over. We are here to help and listen!
No redness on the eyes as of yet,but they were watering something bad for acouple of days while I had some sort of head cold that was going around, that's the trouble with working with the public and their money and their dirty glasses and plates you pick up what ever they give you and it's not always that fat tip you are expecting.But I said to my S.O. this morning I'm tired of being sick 'n tired....and then you hear yourself and say get over it winer, go outsiide , do something grab the kid and go shopping!!!!!Sue
Ferritin is the iron storage. To much causes bad stuff. The iron has to be ruduced with phlebotomy to get it to normal BEFORE tx or the tx won't work. Learned this from experience. High iron causes liver scaring, brain fog, fatigue, brown or bronze color to the skin, typically the chins, diabeties, hair loss, bad temper,elevated ast/ast and all sorts of other bad stuff. It is a genetic thing and is called hemochromotosis. Look it up on Google. When/if they do a liver bx, they should do a iron stain....if they know what they are doing..it is typical with bx to do the stain.....unless they forget. Learned that from experience too. You can be anemic and still have elevated ferritin. I know it sounds crazy, but it is a very real and very common condition, especially in hepc pts. After my hubby got rid of all the extra iron in his system (10 pints in 10 weeks) he felt like a billion bucks, even with the hepc. That iron is wicked. Of course he isn't feeling very spry right now, just did 7/48 tonight. The meds increase the ferritin level to. The test to check for hemochromotosis is called HFE gene type...most docs don't even know that. Anyway, just my 2 cents worth.
Everyone------I'm sorry to keep repeating this ferritin stuff.....but had I known then what I know now about the hemochromotosis....my hubby geno 3A would maybe not have to do the 2nd round of tx.
Yes. I am now 42/48, and am still experiencing the same sinus and bronchial problems. Last September, I started feeling alot of "allergy" sx and my riba rash was really bad. I was prescribed Zyrtec for the itch and other "allergy" sx. Well, that worked "okay" for awhile, but I was getting sicker and more "zapped out"......my left ear, throat, glands in neck down to left shoulder (front and back) and the back of my neck were sore and tender...........well, one day I just "passed out" in public (very scarey and embarassing)...went to my doc and found out that the allergy meds stopped the natural drainage of my sinus, etc and started to "pocket" an infection....I was put on two rounds of anitbiotics....it helped a lot. I am feeling much better, but still have the ear ache (not as bad now) and my throat started getting sore again last night......I know that this will probably be "my thing".....so I am paying attention to my body...I am just glad I never got the mouth sores that people talk about......that seems really painful. I am so grateful for this forum, I know I am not alone in many of my sx and sufferings. It seems that I have more "bad" days now as I get closer to ending tx, but by reading past posts in this forum, many people have gone thru this too.......once again, this forum makes me feel better about my "fears".
Berlynn: Hi...I have not been on site lately....too tired, and feeling sick (this darn sinus/bronchial ****)......I did see your pictures on the Hothep site....what a beautiful family...(You are a hothep....tee hee) Your daughter made a beautiful bride. Thank you for sharing. If I would ever take time to hook up my printer and scanner, I would post too...I have only had my printer/scanner for a year just sitting in the boxes...I can always use tx as my excuse...hahah. I give you alot of credit for gathering your energy and focus to be able to make such a wonderful day for your daughter, your family and friends. My respect and admiration to you. I think you are great. I will email you this weekend.......
Peace and Love
be careful of just assuming all herbs are safe to try. most have not been tested in hcv people. the last thing we want to do is make matters worse. some things can interfer with tx and others can cause the liver to worsen or the virus to replicate faster.
example: i took kava kava for years for sleep before i knew i had hcv. then it turns out it has caused serious liver damage in some people.
on another subject,"a biopsy is essential before going on tx." so says my new GI at my last visit.
my first GI said it was not essential. but, i insisted on it any way, and it turns out i have early cirhosis. the dr. looked shocked at the biopsy report. i wasn't at all surprised.
Interferon boosts our immune systems, not weakens them .That is what kills off the virus.
What we are more prone to on tx is infection from low blood cells (white, I think). Basically, we are prone to bacteria but not to viruses (like flu...or hepatitis!)
I was asking the question about people not under treatment yet. Am at the begging of everything, I found out a year ago thru an accidental needle stick at work, my work made me go get tested and WALAH!! Hep C.. I have had 2 sets of blood work done, one at the beggining and one a couple of weeks ago when my viral load had dropped to 1mill from 18mll... I had an ultra sound done Friday ..results on Monday, I hope. But I have been battling bronchitis for 2weeks, thats why I asked the question, about the immune system. Thanks for your time god bless.Am glad I found this site, It is very hard to talk to my boyfriend since he' worse clueless then I am.He does not get how tire we feel at times.By the way he's negative, thank god!!!
Sorry, I thought you were talking about weakened immune systems on tx. Do you think having Hep C weakens our immune systems? (please don't shoot me down if that ia a stupid question!) I had Hep C for eighteen years but was always very healthy, never catching colds etc even though the biopsy showed fibrosis.
It is better to ask yor dr to help you interpret your blood work, I only look at whatever says "off range" , lol ... and 0 if vl.
as for the hands, I have had carpal tunnel syndrome since 1995, way pre dx and tx. there is a possible relation between hcv and a some extrahepatic conditions such as neuropathy and Raynaud's. some articles on these manifestations can be found in a web search.
BANG !!! Just kiddin, Thats my ? exactly? Does it hurt your immune system prior to TX.
My intuition says it does, but medicaly since am not a doctor, I have no answer. Does anyone out there have one?
Thanks Britgirl.God Bless!!
hi. it was good to hear from you...I was hoping that everything is OK. We just got back from 4 days in Telluride....so I just saw this post. Hope to hear from you soon. I am hanging in there. Trying to adjust my attitude(back to positive). Being so tired lately has brought me down a bit....All of this talk about extending tx sure has got me thinking...what about you? Were you SVR at 12 weeks? Well, it's late...I'll have to try to finish catching up tomorrow. Take care, kim
You may not see this post as it is already the 29th.....I have been looking all over for your e add.....I wrote it down (brain fog).......and cannot find it. I have been wondering how you are doing....I got a smile when we were trying to figure out our shot date.........we are getting closer. You really travel quite a bit....that is so wonderful. You sound like you are keeping active. I have been trying to scroll down to read all of the posts (I have not been on line much lately)....and it is so over whelming to try to "catch up".....I suppose I should at least "lurk" when I am not feeling "social".... I hope you see this...........I am actually starting to feel pretty good, and I think my hair is starting to grow back....all good signs......Peace and Love to you.
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